The illness that robs your memories

Alzheimer's disease is a progressive degenerative disease of the brain which causes gradual depletion of brain cells and resultant loss of mental capability. - EPA

Alzheimer’s disease is a progressive degenerative disease of the brain which causes gradual depletion of brain cells and resultant loss of mental capability.

The personality and behavioural changes of loved ones who suffer Alzheimer’s disease are often incomprehensible to family members, oftentimes leading to conflicts and dilemmas.

Aloysius Alzheimer, a German neuro-pathologist, first described this illness in 1907 in Auguste Deter, a 51-year-old lady who had been experiencing memory, language, as well as psychological problems like hallucination and disorientation.

After she passed away, the postmortem of her brain showed presence of abnormal protein deposits that have now become synonymous with Alzheimer’s disease.

These abnormal proteins result in loss of connection between nerve cells, or neurons, in the brain, and eventually, lead to the death of these cells.

Anatomically, the hippocampus is one of many areas in the brain that play a big role in encoding new memories, and it is one of the first regions of the brain to suffer damage in Alzheimer’s.

Generally, there are three types of Alzheimer’s disease: young-onset that occurs at age 60 years or younger, which is fortunately rare; late-onset, which is the most common type occurring at age 60 and above; and familial Alzheimer’s disease, entirely inherited and occurs at a much younger age, often in the 40s.

The worldwide prevalence of dementia is estimated to be around 30 million people, with 4.6 million affected annually.

The forecasted rate of increase is estimated to be more than 300% in India, China, South Asia and the Western Pacific, including Malaysia, where the prevalence of the elderly with Alzheimer’s disease is likely to exponentially increase with the increasing ageing of the population, resulting in substantial financial and social impact on our society.

Alzheimer’s disease is a progressive degenerative disease of the brain, which causes gradual depletion of brain cells and resultant loss of mental capability.

The most prominent feature of this disease is short-term memory loss.

Events from long ago are remembered well, but those that have occurred recently are recalled with difficulty.

Those with Alzheimer’s may constantly repeat themselves, and forget things that transpired just moments ago.

They may also frequently misplace belongings such as their glasses, keys and money.

Other symptoms include problems with language, which may present as difficulty in finding the right word for everyday objects; being unable to recognise familiar faces or items; losing the ability to use familiar tools and objects; and having trouble performing complex tasks such as driving and banking.

These features may begin very subtly at first, but become more obvious as the disease progresses.

As people with Alzheimer’s deteriorate, they will find it more and more challenging to manage their day-to-day lives.

They will first lose skills that have been acquired over their lifetime, such as managing finances, cooking meals or using a phone.

At more advanced stages, relatively simple activities such as bathing, dressing and toileting, will be impaired.

The rate of progression of Alzheimer’s disease varies from person to person.

However, there is a persistent and inexorable decline from minimal deficit to complete dependence, at which time the person will lose the ability to walk, speak and control their bladder and bowels.

Death occurs at the end, usually from infections such as pneumonia.

The time a person with Alzheimer’s has from symptom onset to death, is between five and 15 years (average eight to 10 years).

A person with Alzheimer’s may also present with behavioural changes and psychiatric manifestations.

The person’s mood may be affected, with the person experiencing depression, anxiety or apathy, or he may develop psychosis, with hallucinations and delusional thoughts.

Some people become disinhibited or aggressive, and others may exhibit purposeless repetitive behaviour, such as constantly fidgeting or wandering aimlessly at night.

Generally, disturbing conduct becomes more common in moderately severe disease.

The enormous physical, psychological and financial impact on the caregivers, however, are not often understood by friends and relatives.

Caregivers may not know how to get help or are sometimes embarrassed by these bizarre behaviours of their loved ones.

Too often, they try to handle such difficult situations on their own, and this usually results in more frustration and guilt.

Often, caregivers have to quit their jobs to give fulltime care to this highly demanding person with Alzheimer’s, and as a result, suffer significant loss of income.

The situation may disrupt their future plans and create much conflict within themselves.

Alzheimer’s disease is not curable, but there are ways to help caregivers cope and manage a person with this illness.

Caregivers need to have a sound understanding of this disease to enhance optimal care, and with pharmacological and non-pharmacological methods, the outcome of care is more likely to be successful.

There are a few drugs that can be used to improve cognition, function and behaviour, but these drugs do not change the course of the illness and may not be effective for everyone.

Non-pharmacological treatment should be considered in all patients with Alzheimer’s, and it has to be tailored to the individual to achieve a balance, as excessive stimulation or over-activity may be counterproductive.

Examples of non-pharmacological therapy include making changes to the environment by moderating noise and other levels of stimulation, using signage, easier access to toilets, well-lit surroundings, improving time orientation by using a prominent calendar/clock, and recreational activities that may enhance quality of life such as exercise, gardening, music, art, pet therapy etc.

Avoiding confrontations and using distraction techniques are useful in preventing anger outbursts that usually end with more agitation and irritabilities.

Using simple words rather than multi-layered sentences help the patient understand instructions, and thus, help them perform their tasks more efficiently.

Knowing the diagnosis earlier means supporting people earlier, and timely and useful information, advice or assistance from either a healthcare professional or support group such as Alzheimer’s Disease Foundation Malaysia (ADFM) can help both the person and caregiver cope better as the disease advances.

Prompt diagnosis allows for future planning.

Early strategising gives time to work through complex legal, financial and personal matters such as making a will, sorting out property issues and making changes to living arrangements.

Being diagnosed early also enables people with Alzheimer’s to be actively involved in discussions about their future while they still retain their mental capacity, particularly regarding treatment choices and end-of-life care.

This eliminates guesswork and potentially avoids future conflict among caregivers.

Therefore, a timely diagnosis allows a person with Alzheimer’s disease and the caregiver to have the best quality of life possible.

The goal is for the person to live a good life and stay independent for as long as possible despite having Alzheimer’s disease, as life does not stop with the diagnosis.

> Dr Rizah Mazzuin Razali & Dr Alan Pok Wen Kin are geriatricians. The Alzheimer’s Disease Foundation of Malaysia (ADFM) will be hosting Forget Me Not, Konsert Amal DiRaja, on Dec 5 at KLCC, in celebration of the 69th birthday of Sultan Sharafuddin Idris Shah, the Sultan of Selangor. The concert will feature the renowned Shanghai Symphony Orchestra, with special guests, local singer-songwriter Najwa Mahiaddin and prize-winning violinist Huang Bin. The 72-piece orchestra will be led by conductor Eugene Pook, and will feature light classical music, popular favourites and sheer symphony magic. For event enquries, please call ADFM at 03-7956 2008/7958 3008 or email adfm@gmail.com. For ticketing enquiries, call TicketCharge at 03-9222 8811 or visit www.ticketcharge.com.my